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Lowell cancer survivor lobbies for better care

LOWELL -- Katy Nowoswiat considers herself lucky, despite having a prosthetic left eye and occasionally walking into a door frame because her depth perception isn't perfect.

"If you're going to get cancer, you should get mine," she joked on Thursday, 20 years after getting diagnosed with retinoblastoma and undergoing surgery to remove her eye. "But unfortunately, not everyone's so lucky."

To "help those patients as much as possible," the Lowell 23-year-old is heading to the Statehouse today to lobby local officials on the need for expanded access to palliative care for cancer patients.

Cancer survivor Katy Nowoswiat, 23, of Lowell, a Relay For Life specialist for the American Cancer Society in Acton, will be at the Statehouse today lobbying for expanded access to palliative care for cancer patients. SUN/David H. Brow

Palliative care is specialized medical care that aims to improve the quality of life for patients and families by focusing on relief from pain, stress and other symptoms of a serious disease.

The American Cancer Society, where Nowoswiat works as a Relay for Life specialist, is spearheading the legislation to expand access.

"I have no real personal connection to palliative care, but I want to help support cancer patients as much as I can," said Nowoswiat, who graduated from Lowell High School in 2008 and Clark University in 2012. "This bill is really important to help spread awareness of what palliative care is and to provide access to the patients who are most in need of it.

"No one wants to be in pain and uncomfortable," she added.

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"You would want this care for your loved ones."

Palliative care is focused on relief from the symptoms, pain and stress of a serious illness, such as cancer. According to the American Cancer Society, medical research confirms that patients who receive palliative care have reduced symptoms -- better quality of life, less pain, less shortness of breath and less nausea -- and live a longer life.

The issue goes beyond access, according to Marc Hymovitz, a lobbyist for the American Cancer Society Cancer Action Network. There's a consistency problem, so a patient's chance of getting access to palliative care depends on the facility and/or the provider at a facility, he said.

The latest national report card on palliative-care team prevalence gave Massachusetts a "B," which means that programs exist in 61 percent to 80 percent of hospitals.

"This is not good enough, especially if we are closer to 61 percent," Hymovitz said. "Furthermore, in many facilities that have comprehensive palliative-care teams, it is often the case that oncologists treating the patient are not aware of palliative-care services available or, worse, the need for palliative-care services."

In a recent American Cancer Society survey, 92 percent of consumers said palliative-care services should be available for seriously ill patients and their families. In addition, 92 percent said they would be highly likely to consider palliative care for themselves or their families if they had a serious illness.

There's also an average savings of $1,696 per discharged palliative-care patient, according to the American Cancer Society.

Erin Caples, a stewardship manager at UMass Lowell, used to work for the former Saints Medical Center, now part of Lowell General Hospital.

"When I was at Saints, I worked at establishing the palliative-care program, which is desperately needed for some patients," Caples said. "If my uncle, who died from cancer, had this option, it would have been a lot easier. It alleviates the pain and stress for patients and their families."

Palliative Care House Bill, an act to "improve quality of life by expanding access to palliative care," would establish a State Advisory Council on Palliative Care and Quality of Life, a Palliative Care Consumer and Professional Information and Education Program, and a palliative-care access initiative.

The ultimate goal is to establish a system for identifying patients who could benefit from palliative care and to provide information about, and facilitate access to, appropriate palliative-care services for patients suffering from a serious illness.

At Lobby Day today, Nowoswiat has legislative meetings scheduled with Lowell state Sen. Eileen Donoghue and state Rep. Kevin Murphy.

"I plan on explaining my cancer survivorship as a connection to this care, and then talk about how palliative care can extend lives," said Nowoswiat, who added that she had a typical childhood after having cancer as a 3-year-old.

Only sky diving and deep-sea diving are off limits because of pressure limitations, but she's not interested in those activities anyway, she said.

"This has the potential to be the first of many Lobby Days for me," said Nowoswiat, who works out of the organization's Acton office and organizes events in Westford, Littleton, Ayer and Burlington. "Whatever the society supports is definitely what I can get behind."

Donoghue, who Nowoswiat will meet at Lobby Day, said Thursday that the legislation for palliative care is "important for health care in the commonwealth."

"It gives patients an opportunity for quality of life and alleviates pain, and that's important," said Donoghue, a Democrat. "If there are ways to make lives more comfortable, then by all means, it should be supported."

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